When it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather than the ‘effect-on-life’ sense) and my diagnosis very mixed… it was then pointed out to me that I’m not alone in this and people need to hear that story.

My problems started years ago with the very easy and seemingly unimportant diagnosis of auto-immune hypothyroidism (Hashimoto’s) but although my thyroid problems were easily controlled with medication I still wasn’t well. As there is a history of auto-immune diseases including RA and Polymyositis in my family, doctors looked into it but blood tests can be very difficult sometimes and results came back with low positives for different things at different times, with nothing clear. A positive skin biopsy seemed to confirm the more lupus oriented diagnosis and so that’s what my problems were originally called even though I had some very strange symptoms for a lupus patient. In addition, my symptoms and blood tests indicated probable Antiphospholipid syndrome (though because of a lab problem this was never confirmed). Luckily that has never been a problem for me unless I forget to take my baby aspirin – I tried that once for a couple of weeks and I wouldn’t recommend it!

In the beginning it felt very important to have a name for my disease. Many years on, I have realised that things are not always that simple and, in some cases, it can be very difficult for doctors to be precise. Most people will ‘only’ have one diagnosis and that is more than enough but I think it is important for our doctors, especially generalists, to realise that things can be more complex.

At the time I was diagnosed, I had quite a lot of inflammation and the pain was stopping me from being very mobile or even walking so I was put on prednisolone along with Plaquenil®. Suddenly, I could walk again and, as a bonus, those strange ‘atypical’ symptoms also nearly disappeared. My life was far from normal but it was a lot better. Later, I was also put on Imuran® and my quality of life improved with fewer symptoms. My blood tests – which had become more precise in between time – improved and, after a few years, I was able to stop Imuran. I was also determined to stop taking prednisolone because of its significant side-effects. That was much more difficult and I failed repeatedly. In the end one of my doctors decided to try partially replacing my prednisolone doses with a small amount of hydrocortisone. In that way, I was able to stop prednisolone but during that time and the next two years I became ill again – blood tests and symptoms showed that it wasn’t a ‘lupus’ problem. My symptoms became severe but no-one could explain, and doctors repeatedly told me that nothing was wrong with me. I was sleeping 10-12 hour nights and taking 3-4 hour naps… and the only answer I got from doctors was that I was “making myself tired from sleeping too much”. I knew that I wasn’t choosing to sleep, instead, I couldn’t stop myself from sleeping, but I was too tired to fight anyone (this led to other problems where I should have fought administrative and legal issues as well). On top of the tiredness, my ‘atypical’ symptoms had come back.

Eventually, we discovered that something else had been hiding, something we are now sure I had prior to lupus – auto-immune Adrenal Insufficiency (Addison’s disease). All my doctors originally thought that my adrenals were having trouble because I had taken prednisolone (a common problem with high doses or longer term use) but no-one expected it to be a primary issue and a separate auto-immune disease. This delayed diagnosis. Suddenly all the ‘atypical’ symptoms such as severe nausea, low blood pressure and other ‘Addison’s’ symptoms were explained.

All in all, it took 11 years from my first Hashimoto’s diagnosis to the last of Addison’s. Some of those years were better than others but now I am doing much better with proper treatment for my Addison’s in addition to my maintenance treatment for connective tissue disease.

Being diagnosed with chronic illness can be a very distressing process but, because I grew up with a mother who has Polymyositis, I wasn’t terrified of it (despite my mother being told, 35 years ago, that she had five years to live – she is doing very well by the way). I am also lucky to be more fascinated by such problems than frightened of them. This has helped me to understand but also to be interested in improving things in a practical way for others when I can.

Of course, I grieved the loss of my job all those years ago but I then realised that there were things that I had always wanted to do but had never had time for. I started to do more photography than I had, and spend some time writing, both life-long passions.

I can now work a little again. I also volunteer, both in Lupus Europe and at the local dog club. I am no longer able to ride horses (once my profession) but have found a new hobby – sheep herding – which takes me out into nature, where I can think of nothing except the animals I’m working with.

I find sports very difficult to do because the repetitive movements don’t suit the chronic tendinitis I have nearly everywhere but I walk a lot with my dogs and cross fields to work the dogs with the sheep, feed the sheep and look after them. Staying active can seem very discouraging at first but I think it’s very important not to give up and to find something that you enjoy (and that your joints allow). If you enjoy it, you are much more likely to push yourself a little and keep going. I know that if I wasn’t as active as I am, I would feel my joints more and have less endurance and more tiredness than I do so I feel it is just as important as my medication – which I take without fail. I am also lucky to have ongoing access to physiotherapy which helps me maintain a level of suppleness that I may lose otherwise. It also helps pain a lot.

The other day my generalist had a new doctor working with him and he asked me what advice I would give her. I said that although people like me are relatively rare, it’s essential not to put all symptoms in one ‘basket’ just because the patient already has a serious diagnosis such as lupus. By doing that, my Addison’s was missed for years and made me very sick, meaning I lost almost two years of ‘living’. Happily, I am now very busy making up that time!

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Katharine lives in Belgium and is a member of the Association Lupus Erythémateux

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1 day ago
LUPUS EUROPE

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ buff.ly/46nDCWT

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

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🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://buff.ly/46nDCWT

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus. 

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Dont smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

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7 CommentsComment on Facebook

This 7 years since Dr. abacha transcendence, his presence is missed now more than ever. Dr.abach was known for his profound wisdom and inspiring messages. Below are some of his insightful statements that continue to be true today. These quotes reflect Dr abacha emphasis on the importance of natural healing, alkaline living, and the significance of a plant-based diet for overall health and wellness. His timeless messages continue to inspire and resonate with individuals seeking a holistic approach to health. The message is loud and clear, and we will continue to share the message of love, healing, and growth. We celebrate the life, work, and teachings of Dr.abacha today and always. We hope his words resonate in your hearts and give you the willpower to continue on your Alkaline Healing Journey. On Health and Healing🌿🌿🌿 Drabacha0442

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For every disease in the world... restore 100% health. That's the only way I could do it. Through what? An intra-cellular cleansing... whether AIDS or blindness... cancer, sarcoma... lupus, sickle cell anaemia, diabetes, sexually transmitted diseases... there is only one diseases. There never have been two disease in the world. There is only one disease: the compromising of the mucous membrane. And the mucous membrane of the Afrikan has been compromised 400 years now.🌿🌿🌿 Drabacha0442

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Finally I have been cured of my Herpes disease after suffering from the virus for over 6years with several out-breaks, thank you Dr abacha for curing me from Herpes for this I'm going to continue sharing so other people can be cured too. he also has cure, HIV, DIABETES, LUPUS, PEPTIC ULCER CANCER, HPV, ZODIAC INFERTILITY, HSV, FIBIORD, WARTS, KIDNEYS 👎👎👎 Drabacha0442

There are illness drugs and injection can't cure, l have seen the great important of natural remedies and the wonderful work they have done in people lives, I have read many testimonies online on how they were cured from various illness and virus, so I decided to contact a herbal specialist, I found herbalist dr abacha a great healer, I ordered medicine for diabete2, Hernia and HBP, I used them as he prescribed and it work perfectly for me, Today I am healed and living a healthy life now, Thanks dr abacha you are the best. Every one needs to use this natural remedies for healing🌿🌿🌿🌿 Drabacha0442

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2 days ago
LUPUS EUROPE

🌺Thank you for your active participation & enthusiasm, which has made our webinar truly exceptional.

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🕗 Time: 20:00 CET.

This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.

Join us and empower yourself with the knowledge that can transform lives! 📱🏥

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